Nurse Conference 2012 - Tracy R Shaltis, RN

Hello everyone, thank you so much for having me today and allowing me to speak to you on this very important, and up until recently, somewhat elusive disease. Thank you to Dr. Seckin, Padma and the Foundation for bringing it to light. We are going to hopefully continue to do that. We have a great tool kit for you to use in your own practice, which is very important, and today we are going to go over it. If you can take out your folders we will get to that in just a little bit.

I just wanted to let you know a little about myself. I am a registered nurse. For the past five years I have been working in hospice. Do not get scared. Everybody gets scared when they hear that. One of the things that I think helps as a hospice nurse is you learn how to truly listen to people, you learn how to be available, to put your things aside and concentrate on the person that is in front of you. You also learn how to work as a multidisciplinary team. For endometriosis I think this is one of the most important things that we can take away today. We cannot do it on our own and we have to use other disciplines of medicine. We have to act together, we have to teach advocacy and we have to help these girls who are coming up. It is a very holistic approach. We need to really make sure that we take that away from here.

Again, because we are probably dealing with a population of young women who are going to have guardians, parents that need to be involved, that of course approaches the holistic care with their family. Again, we talked about spouses, significant others; everybody is affected by this disease when there is someone they know and love who has it.

I have a unique perspective on this disease as well because I also suffered with endometriosis for most of my life, although I did not know what I was suffering with up until recently. Without belaboring the point, as we have heard so many great testimonials today, I will let you know that like MacKenzie, I spent most of my young life feeling isolated, sick, in a closed bedroom with the dark and cold, throwing up, gastrointestinal problems, awful, awful migraines, horrible, just being isolated, physically, emotionally and mentally. So that is the other reason that holistic comes into this because this is not just a physical disease. It really encroaches on, and takes over, your entire life.

Through my whole career with this, if you will, seeing doctors, again, getting brushed off, getting put aside, being told that, "Eh, you know, you're not sucking it up and as girls that is what we put up with, just suck it up". Girls have been told this for a really, really long time and I think it is kind of unfair. We have also been meant to feel, "You know, don't talk about your period, don't talk about these things". It is time we started talking about it. It is time we get this out and we tell these young girls, the school nurses, the nurse practitioners, anyone that we can tell. It is okay to talk about this. It is okay to talk about it and here are the tools that you can use to make sure we open this conversation.

Throughout my life, again, told that I had a low tolerance to pain, all these things that we have been hearing all day. I can relate to every single one of those testimonials. The thing that I feel is important when we are talking to these young girls is that we have to realize there is a lot of kind of embarrassment with that. These are private areas, we are always told that. It is important that we allow them to advocate for themselves and tell them, "If you are feeling this pain, then it's pain, then it's real; it's not in your head". I was told that for a very long time. When I became a nurse, as a career changer I became a nurse, so I thought I kind of would maybe gain some respect. You know, maybe somebody would really listen to me. It got worse. A nurse practitioner who had cared for me, my OBGYN nurse practitioner who cared for me for 15 years at one point alluded to the fact that I was drug seeking. It crushed me as a person. It crushed me as a nurse. She knew who I was; she knew what I had been through. At that point I felt so discounted and so left aside by the medical community that I had worked so hard to become a part of, and was very proud to be a part of. So, even on that level, if you can understand as an adult feeling that way, and to be told that after you are curled up in a ball, dying, it is unbelievable.

My husband, needless to say, deserves the Congressional Medal of Honor, the Purple Heart and probably a Nobel Prize, or whatever it is because he has put up with me for seventeen years. He is a wonderful man. Throughout this, again, to see how he has been affected, how my parents, how my friends have been affected is incredible. I have had amazing support on that front so I am very thankful for that.

When I finally did give up on all this I had gone, we had gone, through IVF because I was told I could not get pregnant. But then they told me I had this endometriosis, "We're going to give you surgery, you're going to have a baby". Well, four surgeries; they cut nerves, they cauterized nerves, they burned endometriosis, no baby, still a lot of pain. It went on and on and on and on. I finally had to give up that dream of having a child. I want you to be able to see that if we do not catch this early, it can result in incredible heartbreak, incredible heartbreak. That lessens a little bit over time but it never goes away. It is so vitally important that we are using these tool kits and getting these young women when we are able to treat this disease.

When you are talking about a 12-year-old girl...that is another thing we are going to talk about...I am sure most of you who deal with these populations, how we speak to a 12-year-old girl about these tool kits and with them using these took kits, is going to be quite different as to how we speak to an 18, 19-year-old girl. A 12-year-old girl is not thinking about her fertility. We do not want to ever scare these girls any more than they probably are. When we are using these took kits and we are opening this conversation it is important to be age appropriate and to know who our audience is when we are talking to these girls. It is not necessarily, "Oh, you're going to maybe lose your fertility" but we need to say "This is something that is very treatable if it is something you have. We're going to help you and it's going to save you a lifetime of pain and agony". And I think that, as I'm sure you all know because if you work in this population, how we speak to these girls is going to be different.

I just wanted to give you that little bit of background on myself to let you know that it does not always turn out the best. But when I found Dr. Seckin and he fixed me that was the best thing.

You know I kept telling you my doctors, the male doctors, who saw me and said nothing was wrong with me, at one point I was so frustrated I told him when he grew a uterus and a couple of ovaries call me and let me know. I picked up my handbag and walked out of the office. I did not think that anybody could understand. When I got to Dr. Seckin I walked in and pretty much demanded that he fix me, started spewing information and he said, "Wait a minute. Who are you? Sit down and let me talk to you and what do you do..." And he looked at my husband and said, "So what are you doing?" And I said, "No, no, no, no, wait, wait, wait..." because I was so afraid that I was going to get cut off and dismissed. I wanted him to hear everything I had to say. This is the other point, we need to make sure that these girls are getting to people who are going to sit down and say, "Hold on, let me find out a little bit about you first, and who you are, and what are your hobbies?" I was like, "What!" Did he just ask me what I do, like my hobbies? I cannot believe it. Doctors were dismissing me left and right. These are all points that we want to address as we go forward with the tool kit.

If you can please look ahead; I am sorry, I skipped ahead on my own things there. We are going to pull out the actual Endometriosis Screening tool kit. It is our suggestion that every girl you come in contact with should be screened. We should be screening young women and girls just as we screen them for any other childhood and teenage and otherwise diseases. Again, when we do this present these surveys in a non-threatening way, say, "Look, you know you may not have this, but you may have it. If you do, it's very treatable, but we're going to find out". I am obviously not going to read directly through all these but I just want to make some important points.

We do not want to ask questions that are leading and we do not want to add to the conversation as far as this is concerned. When we give this tool kit and we say "we want you to answer these questions" that is the time to sit back and listen. Allow the girl to express what her feelings are and what she is feeling. If we read into it too much or start suggesting too much it may change their answers. Also, I think if we start using too much medical jargon it might start to scare. We just want to get their feelings on this first one. We want to emphasize the fact that it is a very treatable disease. And I like the fact that what we are using with this is "consider endometriosis". Consider. We are only checking. We are only considering. We are not saying that you have it but we are going to find out and we are going to help you.

As MacKenzie and the others have given their testimonials, part of the question says, "In the past year have you experienced so much pain around your periods that you are unable to attend school, work or social events? Allow them to give their answer. If it is a yes or no then say, "Elaborate on that a little bit. Let me hear what your experience was with that". The heavy bleeding - we want to kind of say to them, "You know what, if you can't make it through a class, or an hour, without changing your pad or tampon, that's heavy bleeding. That might be a question where it is like "what do you consider heavy bleeding?", and also experience the recurring pelvic pain and explaining what that might be. At the same time that we do not want to encourage their answers, again, we never, ever want to discount what they are feeling. It is important for us to be active listeners as we do very much so in nursing.

Also, just to mention, for the purposes of this discussion we are speaking about girls who have already had their periods. Signs and symptoms have been identified in girls before having their periods, but we are kind of going for the middle ground here because that would take a different diagnostic tool.

This would be the first tool that you are working on, and working on with the girl. The second page, if they answer yes to one of these questions, probably something is going on. If they answer yes to two or more of these questions you want to go to the Consider Endometriosis tool. For this one not everyone will need guidance through it. We were also kind of contemplating the fact that we might get more honest answers if these were given and then asked to be brought back for a second appointment with the nurse practitioners who see patients. We then can go through it a little bit more. They may answer more honestly if they have it or if they have time to think about it and go over it a little bit.

It is very important to stick to the script when evaluating the patients through the survey. We want the answers to be honest and non-biased. We want to encourage their personal experience with this. Always, always, always, and I think it goes without saying because we are nurses, you just want to show compassion. We all have things that go on in our lives and we are always thinking about what is coming up next probably and how our schedules are crazy. But if there is one thing that I have been taught in hospice, and I have been taught a lot, it is that this is this person's life that is in front of you. It is so meaningful. If that was my loved one I would want somebody to give them every ounce of their concentration, consideration and compassion, especially when we are dealing with a younger population. It is such a confusing time. We have to make sure that we are giving them all this compassion and allowing them to know that we are truly listening to what they are experiencing, and that we can provide help. We do not want it to be frightening for them. It is that really delicate balance between providing enough information to educate them and empower them without scaring them.

On the Consider Endometriosis you can see that we delve a little bit deeper here. The questions are a little bit more detailed and we have the symptom check off on the side. I think this is nice and easy because they can just go down them and check them off. I mean if that is not the short end of the stick there I do not know what is because I think a lot of us can say you suffer with all that plus more. It really shows that, "Yeah, there's obviously something going on here".

If that right side is heavily marked up we want to start to bring in the parents, talk about how we are going to start that inter-disciplinary and holistic approach with, "Alright, something is going on here". If they are children, if they are under 18 and they are not on their own, we definitely need to start involving their parents and their guardians.

Again, maybe the school nurses, maybe this is something that you can hand out and when you do hand it out, say, "This is something that when you go to your primary care physician, you want to bring this to your primary care physician if you are answering yes to these questions. Or, if you find you are checking a lot of these things off, you want to share this with your doctor". I think this is where it is important to bring the parents in because obviously we want to make sure that the parents know something is going on. But, when you go to that primary care doctor that is going to be the first line, and we need to say, "Take this with you. Now you are armed with tools. Now your doctor can't just say ‘Nope, I'm dismissing you'. Because here it is, and somebody else is looking at this". I think it is very empowering to have this tool. To have these girls fill it out and get there and say, "But look, somebody told me that this is a problem. So, I know it's a problem now. Now I have the knowledge, now I'm empowered". Now we are starting to open the conversation and let them know, "It's not something I need to be quiet about. If I have been quiet I'm not going to be quiet about it anymore because somebody told me this is a problem, so I would like some help". I think that that is one of the great things about this.

Nurse practitioners, when you hand it out if you would like to have them do it on their own, say, "Bring this to your next appointment". And school nurses, again, it is important to let them know, "Take this to your parents and take this to your regular doctor when you go to your appointment". And follow up. We do that in nursing all the time, right? It is not any good if we are not following up and seeing if what we are doing is making a difference, or if there is follow through. I think that is a really important part of this. Also, as always, we want to keep a copy of this for their charts and I think just getting them armed with the tools and the knowledge they need.

I just want to look, real quick, at number four. I think that is a really important one as we heard from many people. I can remember, my mother never said, "You're going to die when you have your period, it's going to be bad". She never said anything but as a child I watched that woman suffer horribly, horribly. And she got her period when she was nine years old as well; and at 40 a complete hysterectomy. I do not think she ever really knew why because they just took it out. They said that that was it. It is so important for us to start delving in and knowing. If somebody would have asked me these questions, I would have been saved years and years of suffering and pain, and I might have been able to go on and have a child. It is so important that we are doing this.

I am going to move on quickly to this page. I know it looks like a lot. I am not going to belabor this by reading through every single thing but I would like to make some important points on this.

This is a really good page and at your leisure everybody should read over this and know what is on it because this is such an empowering page. One of the things, I think, by giving this to the parent or guardian will help because they can read through this and also understand more themselves and empower themselves, "Wow! I really need to be looking at these things and I never thought of this". Educating the parents of course, and the guardians, is paramount because when you have minors this is the line that we are going to go through. Also encourage the parents to advocate for their children instead of saying, "You know, I don't know. I didn't think it was that bad when I had my periods". It is giving them that education as well. This is very detailed so we can provide you with the tools you need to have that knowledge.

There are a couple of things I want to mention on here; the family doctor or another trusted professional, which is in the first paragraph, again, take these tools to them. If there is not somebody that is addressing this and not trusting, you need to move and go and find somebody else. That is really important, someone who listens to you patiently. As I mentioned with what my experience is with Dr. Seckin after being dismissed, and dismissed, and cut off in mid-sentence, somebody who listens to you patiently. Someone who looks you in the eye, who is not looking at their watch and got a hand on the door knob, because it happens. As I mentioned, it is difficult for the doctor to ignore it when you have this in front of you and you are handing it to him.

We want to understand that the details of this are not to diagnose, because this is not the proper way to diagnose. We know laparoscopic surgery is. But this is the way to get toward that, to find that right doctor.

What is the doctor's attitude about your role in health care? I think this is for the nurse practitioners and the nurses. If you are working with a doctor and you are pointing this out to them, how is their respect level for you? As a health care professional I felt that that would gain me a little bit of respect and in a lot of cases it did not. We should all have that inter-disciplinary team and we all deserve that same respect. It does not matter what credentials you have after your name. We are all here to help that patient. We have to work together. If it is not somebody that is going to work with you, you need to move on to someone who will.

Finding the right surgeon - as we also heard today there are a lot of different treatments for endometriosis. Not all treatments are right for everyone so it is important to know what treatments are out there. There are the surgeries, the cauteries, the Luprons; there are all those different things but it is important to find what is right for you. Many of the things were not right for me and so I found excision. It is important to know, be educated about the myriad of treatments that are out there and what will be right, and what also will be age appropriate because we are talking about a pretty wide range here.

About the medication treatments, it is important as well for that. I, like Padma, was just knocking myself out with anything I could and happy to do it because... If somebody had told me that voodoo would work I was ready to do it. We need to understand that there are those treatments but they should be monitored. I suffered with migraines for years so I had access to narcotics. When I had this pain I would do anything. I would do anything to get rid of it.

Never rule out a second opinion, or a third, or a fourth, or a fifth because that is what it took me. We need to tell girls, not just let them go out of the office and, "Oh, I'm seeing this girl in my office all the time", that should be raising a flag. "I don't see this girl in my class" or "They are complaining of something that I've never heard about but let me find out about it. Let me educate myself as a health care professional. And let me find out so I can help this human being". I think that is what it is about.

I cannot stress enough about this team effort. It is a very, very complex disease. Dr. Wilson, the things that you mentioned were incredible and I wish I knew those things. I wish somebody would have acknowledged me. Until I saw Padma's video when I advocated for myself, I cried my eyes out. It was the first time I was ever validated. I found out I was not crazy, although my husband might argue that one too! It was...to know that it was okay that you are feeling those feelings and you are not crazy, you are not isolated anymore and that somebody out there understands and can care for you. It is so important to continue to advocate, to move on. And as nurses, if we are seeing that these girls are not getting the care that they need, it is our job to support them and to steer them in the right direction and make sure that they are getting the care they need. Somebody who really listens and hears, just as we do, because that is what we do.

Please, I encourage you to read through this, it is...there is so much vital information on this.

We are going to move on to the Personal Pain Profile. As we know individuals all learn differently. We each pick things up differently; some of us are reading learners, some of us are visual learners, some of us like to hear things, and some people need all of those. We thought we have this survey, we have this and then we are going to go on to the calendar. We made the pain profile so they can marl a "P" where they have pain during their period. They can mark an "X" for where they have pain any other time of the month, or a "C" where there is constant pain, which was my case, I was in constant pain.

If necessary, if they feel like they want to color code it - anything that works. You know this is for them to mark up as they please. I cannot mention it enough but we have heard it before, pain is what that person says it is. Not any of us can judge another human being's pain whether it is physical, emotional, mental or all three. If somebody says they are in pain they are not just saying it. If they are trying to get attention they are probably trying to get attention so they can get help. We cannot dismiss that. This is going to be, I think, a really great tool, especially easy enough for girls to just mark where they are having pain and it can be all over.

Moving on, next, to the calendar. I am sorry but I am trying to zip through for you. This we would start on the first day of their period. They would mark as day one because we are going to go through this not as a monthly calendar, but as a cycle calendar. We tried to make it as easy as possible because when you are in that much pain and you are kind of miserable the last thing you feel like doing is filling out paper work. This they can at least just check off. We did leave a little space for "Other" because, as we know, there can be many other symptoms. These are pretty much the basic ones that we see a lot. Also, encourage your girls, if they feel that they need to, to keep a pain journal. If this is not enough get a little journal. And on those days correlate them and say, "I was feeling these things that I checked off but I was also feeling this". If they took medication it is important to know what they were taking and how much they were taking. If you want to encourage them to use a pain journal it is probably a good idea too, and if they feel like doing that it can be really cathartic. It can be great.

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